Learning to navigate living with a chronic illness is a journey of its own. You relearn how to live your life. In today’s post, I’m going to cover the do’s and don’ts for people living with lupus from my personal experience.
How to live with lupus isn’t one size fits all. It’s very complicated and unique to the individual. But I thought a generalized list of things to keep in mind could be helpful and maybe even centering for some!
It took me years to begin to navigate and realize how my life had changed and almost molded itself around my disease. My goal is to find ways to work with my disease instead of against it. I don’t want to miss out on summer fun because the sun might throw me into a flare, or be embarrassed because my lupus rash is out and about.
My dad called me tomato face right before I was diagnosed for several months every time my lupus rash would come out. It made me want to never let anyone see it and hide a condition I couldn’t control.
Which lead me to wanting to find ways to cope that allow me to do anything and everything I want and not aggravate my disease. I started my journey of finding ways to work with my disease instead of against it by changing my mindset.
This list of do’s and don’ts is more of a list of life lessons I learned while living with lupus. Not a playbook for how you should live your life with lupus. The list contains all the mindset changes I chose to make which helped me work with my disease.
Don’ts for living with lupus
- Be embarrassed by your condition. You might need more help, time, or a break. That is completely fine. Learning to listen to your body and not push yourself too far. I used to avoid activities in the sun because sunlight triggers my lupus rash. There are ways to work with and around your chronic illness. You just have to be a little crafty and creative. Always wear SPF, stay in the shade or bring an umbrella!
- Don’t allow family or friends in your life who do not respect your disease. The saying “if they wanted to they would” really rings true here. Family and friends that have your best interest at heart will listen to you and support you and your disease. It became very clear to me how someone who truly cares about you will act. Protect your peace and have discernment when it comes to anyone making you feel some type of way about your chronic illness. I will be writing a post about this soon to go more in-depth. Keep an eye out because you don’t want to miss that one!
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Do’s for living with lupus
- Be your advocate, no one can speak up for you. You have to stand up for yourself and your disease. Learning this turned me from a shy person into someone who is not afraid to speak their mind and advocate in any situation for themselves.
- Be kind to yourself. You have a chronic illness. You need to become your own best friend and biggest cheerleader. Simple tasks can be extremely difficult instead of being upset you can’t do more etc. Treat yourself how you would treat others; graciously and with love. Growth can only happen in a loving and safe environment and you have to create that for yourself.
- Be your own best friend. Talk and treat yourself how you would treat a friend. I’m willing to bet it’s a complete 180 from how you treat yourself. We tend to be the hardest on ourselves which only hurts us in the long run and prevents growth. You have to be compassionate and treat yourself kindly.
- Learn how to control your emotions. Stress affects autoimmune diseases directly. Click here to read up on stress and Autoimmunity. Becoming emotionally intelligent will change your world. Genuinely one of the best things I’ve invested time into is learning the art of emotional intelligence. I read this book “Emotional Intelligence: For a Better Life, success at work, and happier relationships.” By: Brandon Goleman. Which opened the door into the EQ world for me.
What I learned is only you give people the power to upset you and control your emotional state. Which only hurts you because stress DIRECTLY affects Autoimmune diseases. I took my power back by learning to control my emotions and I will never turn back to being emotionally unintelligent. I’ve been more at peace, happier, and honestly, it brought me closer in my relationship with God.
I know that is a big statement to make. You’re probably thinking” How did that bring you closer to God?”
Well when you’re in an emotional state you don’t think clearly. I always wanted to handle my own issues instead of handing them over to God because I had ZERO control over my emotions. I would never allow God to work in my life because I couldn’t give anything over to him. I would allow myself to get emotionally riled up and lean on my own understanding and judgement.
For example, let’s go back to the tomato face comment. When my father was calling me a tomato face I was extremely sick and in a flare, didn’t know what was wrong with me(had not been diagnosed yet with Lupus), and he found humor in embarrassing me in front of other people over a rash I couldn’t control…… that should have been an indication, there is a bigger health issue that’s underlying. Since he couldn’t get the hint… or better yet he didn’t want to acknowledge the very obvious symptoms that I was very sick at the time. My Mom and sister both brought it to his attention that this could mean something much bigger. His response to my sister was that “She (aka me) always likes to play make believe and nothing was wrong with her”. I ruminated on this for months after my first ANA came up abnormal.
He never apologized or admitted it was wrong nor ever acknowledged that I was actually sick. I was STILL called tomato face after I got my ANA back and even after it was explained that my dermatologist felt it was Lupus that was causing my “tomato face”. So what did I do? I continued to ruminate on this for the next 7 months while waiting for my first rheumatologist appointment.
Thoughts like:
“How could he call his daughter whose face is swollen and bright red a tomato face?”
“Did he not really care that I was sick? “
“Why did he continue to humiliate me in front of my whole family when he knew I was deeply embarrassed?”
“Why did he use my “tomato face” for his advantage of leaving a party early if he didn’t even believe there was anything wrong with me?”
“Why why why?”
I had all these thoughts running through my head and was so hurt I wanted to say mean things back to him to hurt him the way he hurt me! I felt betrayed and humiliated. Your 16yr old daughter is extremely sick, in pain, and doesn’t know what is wrong with her and you treat her like she is making everything up (while I sit there with a swollen face with a bright red butterfly rash as the cherry on top) and make her the family joke?
Let me go ahead and clarify feeling the emotions of hurt, betrayal, and sadness are completely normal and expected. What’s not normal is living in these emotions for months and months. Harboring these feelings only pushed me farther away in my relationship with God, set my emotional regulation/intelligence back a few notches, and caused emotional stress which fed and flared my autoimmune diseases. Learning how to process emotions and handle situations has completely changed my life!
I know that was a long tangent but I fell like it’s a good example of no matter what’s happen you have to take your power back. One of the only things you ever fully have control over in this life is how you react. No matter how you react it’s already happened. Learn from me and keep your peace because it only benefits you in the long run. Anyways lets get back to the last item on the list.
- Learning how to work with your disease instead of against it. I like to find hacks that let me enjoy the sun and get everything I need to be done without throwing me into a flare-up. It’s a learning process but well worth it. You just have to be creative with how you do things! If you’re interested in learning more about how I work with my autoimmune diseases, here are a few articles you can check out.
“Cleaning hacks for people with chronic illness”
“How to make life with chronic illness easier”
Theres no right or wrong way to do life with lupus. These are just the ways I’ve found that have made my life more peaceful and that have helped me get healthier. It definitely takes time to adjust and get use to new habits but its more than worth it. What are your Do’s and Don’ts for life with lupus. We would love to know leave a comment below!
